You have been ill with an undiagnosed condition for almost five years. You were an active person who led a healthy lifestyle. You jogged on a treadmill, worked out at the gym and rode a bike.
Now your worst nightmare has occurred. You are lucky to sleep 2 hours per day/night. Scared and reluctant to take a band-aid sleep medication which doesn't stop your unexplained seizure movements, you are desperate for sleep and relief. The sleep med does nothing for seizure movements so you end up feeling drugged and severely sleep deprived.
The neurologist has no substantial findings but yet your sleep study shows you woke up approximately 150 times. You start reacting to everything in your environment (multiple chemical sensitivity) and most foods. You become scared to eat for fear of a reaction.
No one comprehends or seems to have a sense of urgency about the torture you are enduring, night after night. You sit in your car and cry after leaving your 15th doctor's appointment with no answers. You feel like a prisoner of war (POW) and go into isolation for fear of reacting to anything. You pray for God to give you the wisdom, strength and discernment to find the right physician for a correct diagnosis and healing. All you want is your life back.
Yes folks....this extremely ill, tortured patient was me. Life was definitely NOT a beach back then, even though I was living an hour from the most beautiful beach in the country, Siesta Key, Florida.
I still had not been diagnosed in the photo below and had been suffering for almost four years. I went from a size 6 in 2006 to a size 1 by 2010.
I made my rounds with approximately 25 specialists in Tampa, Sarasota, Savannah and Atlanta. While I continually researched medical journal articles in PubMed, Medscape, and a host of other medical journals, while running from specialist to specialist....with no concrete diagnosis. I would have given anything to hire a qualified, independent patient advocate to help me navigate to the right physician or healthcare team.
Why do I bring this to your attention?
When you or a loved one are invisibly ill but at a point where help is needed (like myself), you need a trusted friend or relative to assist with the vetting process of hiring an independent patient advocate. Unfortunately, there are many ill individuals who do not have any family or close friends to help.
I was unaware of independent patient advocacy at the time I became ill and therefore never explored it as an option. I would have given anything to have found a knowledgeable and empathetic independent advocate. It would have saved me years of unnecessary suffering; physically, emotionally and financially.
God uses our pain to help others. After experiencing horrific personal suffering, I found my purpose and passion. I felt God calling me to use my trials to help others who were going through a similar experience. I realized that patient advocacy was how I could best serve Him.
Just as a recruiter or hiring manager prepares to interview a job candidate, you should conduct your pre-interview research on the patient advocate candidates that you are considering to hire.
There are four steps to interview and hire an independent or private patient advocate.
1. Determine what services you need Ideally, you'll want to make a list of your specific wants, needs and wishes. For example, If you have recently received a diagnosis of Lyme Disease, you might want to seek a patient advocate who has experience with navigating patients to functional or integrative medicine physicians, as well as expertise with helping Lyme Disease patients. Gathering your specific needs will help you better narrow your search for selecting a patient advocate.
2. Do a search for advocates who offer the services you need.
3. Contact them to see if they are available to help you.
4. Interview them to be sure you are comfortable with the conversation and are confident that they can help you (Find the sample questions below).
How to contact a Health or Patient Advocate
Once you have identified professionals that may be able to help you, make initial contact either by phone or email. Send them your name and contact information, plus a brief description (1-2 sentences) of your request for help.
Keep in mind, an advocate may not need to be located near you. Many services can be provided remotely.
Interview them carefully to be sure they offer the services you need. Refer to the sample interview questions below.
Interview questions to help you choose:
Please note that your interview time is limited so be prepared to have no longer than 15 minutes to ask your questions.
What are your advocacy credentials?
- What is your background, training, and experience providing these services?
- Have you handled other cases similar to mine?
- How long have you been an independent advocate?
What type of work did you do prior to, or before going into independent practice?
- Do you subscribe or adhere to a Code of Professional Standards?
- Are you certified for this work? (Note: There are no current licensing requirements for advocates in any state or province. There are a handful of relevant certifications).
What do you charge for your services?
No two professionals charge for their services in exactly the same way. The cost will vary depending on:
- the services you need
- the advocates location and prevailing rates
- the advocate's credentials, such as experience and education
- the amount of time you work together
- additional factors such as necessary travel, acquisition of medical records, or
others which may cause pricing to go higher or lower.
Do you have professional liability and/or Errors and Omissions Insurance?
Most independent or private patient advocates have insurance to protect you and themselves. If the advocate you interview does not E&O insurance, ask them for a plausible reason.
Does anyone else pay you to help me?
The purpose of this question is to assess potential conflicts-of-interest. For example, there are cases when someone is paid a commission for placing patients in a nursing home or with other services. They may be less objective, so you'll want to assess possible conflicts with the Allegiance Factor.
What is your caseload?
You want to determine if the advocate has the time to handle your case
Do you have references?
Even though an advocate may have testimonials on their website, are they willing to provide you references from other people they have worked with?
Please remember that independent professionals may understandably be reluctant to give you names and contact information for references due to privacy laws.
However, it would make sense to ask them if they will ask a former client to contact you to provide a reference.
Optional interview questions to ask:
1. Are you "on call" 24/7 or do you have specific hours?
2. Do you provide reports on services you provide in my absence? (Important for situations where the caregiver lives in one place but the patient lives somewhere else).
As someone who truly understands your fears and frustrations, my advocacy practice is focused on helping invisibly ill, complex and/or chronically ill clients who have been seen by multiple doctors, specialists and health care practitioners with no real diagnosis, improvement in health, or identifying the root cause of your illness. If you or your loved one have symptoms that you are questioning and/or do not make sense, call me today!
Proverbs 3: 5-8 says: "Trust in the Lord with all your heart and lean not on your own understanding: in all your ways submit to him, and he will make your paths straight. Do not be wise in your own eyes; fear the Lord and shun evil."
In closing, I will leave you with the beautiful song, You're Gonna Be Okay, by Christian music artists Brian & Jenn Johnson (Bethel Music).
Remember, you are not alone. Don't give up and don't give in! If your gut is telling you that something is wrong, contact me today! Let me help navigate you out of the storm and reclaim your quality of life.
Founder & Chief Patient Advocate
PURITY PATIENT ADVOCATES LLC
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